Dave, Author at Epilepsy Dad

Giving Thanks And Giving Back

Each December, we make a special end-of-year donation to a charity. This year, we are giving thanks and donating to the organizations that helped my son and our family through our first year with epilepsy.

We are very fortunate. Even though my son’s epilepsy is complicated, we have insurance, and I have a good job working with compassionate people who allow me to balance work with taking care of my son and my family. We’ve met a lot of other families that were less fortunate, and the groups that we are donating to this year provide help to everyone. That support and the research necessary to better understand epilepsy costs money, and that is why we are donating.

If you are looking for a place to put a donation at the end of the year, each of these groups has had a direct, positive impact on my family, and I would appreciate any support you could give them.

Children’s Hospital of Philadelphia

We spent more than two months on the Neurology floor in the Children’s Hospital of Philadelphia (CHOP). Many of those days, we were at the bedside of our son praying that the seizures would stop. Thankfully, we were able to eventually go home thanks to the many, many people at CHOP that took part in my son’s care. The doctors, therapists, Child Life Services, custodial staff, EEG and phlebotomy techs, volunteers, and especially the amazing nurses on the neurology floor, collectively took care of our son and our family, and we are unspeakably grateful.

You can donate to the Children’s Hospital of Philadelphia on their Donation page.

Children’s Hospital of Philadelphia Ketogenic Kitchen

Our son has refractory epilepsy, which means that he doesn’t respond well to medicine. To help with his seizures, we were put on the ketogenic diet. At CHOP, on-boarding to the keto diet is a week-long inpatient process where the children are monitored while adjusting to the diet and where the families are trained on how to be successful with the diet, including classes in the Keto Kitchen on measuring and cooking keto meals. The Keto Team also hosts keto cooking classes, and fund a culinary intern to explore more creative, tasty meals for the keto kids.

You can donate to the CHOP Keto Kitchen on their Donation page.

Epilepsy Foundation of Eastern Pennsylvania

When my son was diagnosed with epilepsy, we spent the first few months in the hospital surrounded by an amazing support network. When we left the hospital, though, we felt very alone. We didn’t know who to talk to or where to find more information about our new world. We didn’t know what resources we would need or what was available. We didn’t know how to talk to the people around us about epilepsy. Fortunately, the resources available through the Epilepsy Foundation and the Epilepsy Foundation of Eastern Pennsylvania (EFEPA) helped. We walked in their Summer Stroll and learned more about other programs they had for the epilepsy community. They also came in to my son’s school and talked to his teachers and classmates about epilepsy. When the world seemed big, and scary, and dark, EFEPA provided a bit of light.

You can donate to the Epilepsy Foundation of Eastern Pennsylvania on their Donation page.

In Good Times And In Bad Times

I needed to clear up some space on my computer today, so I pulled up a list of the biggest files on my computer. Near the top of the list were a group of movie files with generic names. I clicked on the first one, and it was a video of my son that we made to document his behavior when it was at its worst.

I wasn’t prepared to see the video, and it really unsettled me. Even now, hours later, I’m thinking about the video and how desperate and scared we were. There were no answers for why he was acting the way he way. It could have been side effects of the medicine, or damage from the seizures, or a combination of both, or something else entirely. No one could tell us why it was happening, and no one could tell us if it would get any better.

In the video, he was having one of his typical outbursts. I say typical, but they were typical for where he was, but not typical for the almost five years of life he had before his seizures started. His brain would “go backwards”, as he eloquently put it during one of his lucid moments, and he would start hitting, scratching spitting, and screaming. The picture above was another symptom where his body would take control and he would somersault or flop around on the couch or the floor. The image at the top of this post was of him throwing a toy at me while I filmed the outburst.

On a good day, we would only have a few, short episodes. On a bad day, we’d spend hours holding him down at bedtime. It was agonizing as a parent to see that happen to my child, especially when the outbursts ended with him expressing such remorse for what his body did and, I suspect, terrified that he wasn’t able to control it.

Watching that video, the thoughts that I had lost my son and that his life was going to be nothing more than managing one uncontrollable outburst after another for the rest of his life came rushing back. The feeling of desperation, the praying that there would be some relief, some help for him, some help for us, came back, as well. After a few seconds, I was so overwhelmed that I clicked stop, a luxury I have now that I wish I had back when this was actually happening.

When I got home, I told my wife that I had pulled up the video and that it upset me, and she comforted me like she always does. She asked if I had deleted the videos. I told her I didn’t, but I didn’t tell her why because I didn’t know myself. Am I keeping them to remind me of how hard it was so that I can appreciate where we are now? Are they clinical files incase someone, years from now, can explain to me what they were and why they happened? Do they matter, or should I just wipe them from my hard drive and let Time do the same thing for my memories?

Tonight, I don’t know what I should do with those videos, but I did know what I should do with my son, which is the same thing I’ve done since he was born, in good times and in bad. I laid next to him listening to him suck his fingers as he started to drift off to sleep. I kissed him on the forehead and told him that I loved him more than anything, and that I was lucky to be his father.

My Son Has Epilepsy, And It’s OK To Talk About It

A few weeks ago, a representative from the Epilepsy Foundation visited my son’s kindergarten class to talk to them about epilepsy.

When the school year started, my wife and I had a conversation with my son’s teacher, setting expectations and filling her in on his condition. One suggestion that his teacher made was talking to the other kids about epilepsy. My wife thought it was a good idea (she knows kids way better than I do), but I was hesitant.

I was worried that calling attention to his epilepsy would make my son will feel different and that talking about his epilepsy would announce to his class that something was wrong with him. I wanted to hide his epilepsy so that he could just be a kindergartener, and make friends, and just be a normal kid. Subconsciously, maybe I felt that if we didn’t talk about epilepsy that it would somehow magically go away.

I was traveling for work so I wasn’t able to be in class when the coordinator talked to the kids. But on the other side of the country, the fallout that I dreaded from exposing my son’s not-so-secret never came. My wife told me that my son sat up in front of the class, in full view of his peers, as they asked simple, fundamental questions that my son helped answer. Why doesn’t he always eat lunch? Why does he leave early? Do seizures hurt? Can I catch epilepsy from him?

And then that was it. After they were done asking questions, they went back to their school day. They didn’t treat my son any differently and, perhaps, they had a better understanding of the situation because they got answers to those questions that they didn’t know they could ask.

I know that not every conversation about epilepsy is going to be that easy. There will be people that are curious, or confused, or unaware of his condition. There will be bullies that will use my son’s condition as ammunition to attack him. But the answer isn’t to hide it away and pretend it’s not there, it’s to talk about it, to help people around him understand, and to help him feel confident in himself. Hiding bring shame, and the last thing I want is for him to be ashamed of anything about himself.

Not talking about epilepsy isn’t going to make it go away. But maybe by talking about it, other people will be more comfortable talking about it, too. Then it becomes a conversation and, through conversation, we can have understanding and compassion.